By Anne Fricke
I was recently asked to update the "Letter for Substitute" for my daughter. Like many parents of children with special needs and disabilities, the responsibility to educate the class rests with me. It can be a daunting, emotional process to share your child's challenges and potential vulnerabilities with their peers. You may share the fears that I have, that those vulnerabilities may be used against her in the wrong hands. You may also share the same intention and hope as I do and pray that educating their peers will help them be understood and keep them safe. Thankfully, thus far, the majority of Freya's peers have responded with the latter.
Before I spoke to the class, I sent a letter to parents to prepare them for the upcoming conversation. I'm including the letter here for those who may wish to borrow from it or get ideas on how to approach the subject with their school. It may not always be easy to tell our story, but it is certainly valuable to do so.
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Hello Fellow -rd Grade Parents!
Like most, if not all, of you, I am an advocate for inclusion and education. I believe it is difficult to have one without the other. For this reason, I am sending you this email.
Many of you know that Freya has Prader-Willi Syndrome. Maybe you’ve heard that but don’t know what it means. I didn’t. I assume that most of your children recognize that Freya has some unique challenges and needs and I am grateful for all of their kindness. Freya and I are preparing to speak to the class about Prader-Willi Syndrome so that her classmates may understand her better and hopefully help school be a safe place for her.
This is an incredibly vulnerable moment for us, perhaps more so for me. Where I grew up in southern Indiana, kids with diverse needs were carted off to the special education classroom. They rode the short bus and went to a separate classroom down some hallway at the back of the school. They sat in their own section during rallies and I honestly don’t remember a single one of them. I never want that for Freya.
Freya is not feeling confident about this conversation with her class. As her mother, and an advocate in the special needs community, I know this talk is important. But I have fear as well. I want the information gained simply to be a deeper understanding of who Freya is, why she may or may not do certain things, and especially the importance of food security to keep her safe. We are not looking for pity or a de-valuing of her as a peer. She does not need to become a project or a cause for someone.
Freya is a happy, willful, friendly, smart girl. She has some learning accommodations, struggles with her articulation, and is most likely never going to win a track meet. Like all of the other kids in the class, she is an asset.
Before I have this conversation with your children, I wanted to put it out there to you all for possible questions or suggestions on what to say. Have your kids noticed things about Freya and asked you about them? Have they had questions about people with diverse needs? Is there a way I can make this information more accessible to them?
I’m not going to go deeply into the technical side of the disorder, just mostly about the importance of food security and certain things that Freya herself has mentioned talking about (like why she sees the OT, why she gets a shot of growth hormone every night, or how finger knitting during class helps keep her hands busy so she doesn’t pick, a typical sign of anxiety).
Please feel free to let me know if there are things you would like me to discuss with your kids. I am aware that kids have questions that are uncomfortable and may seem rude when they are really just trying to understand and make sense of the world around them, so please don’t be shy.
The teacher suggested I share a few podcast episodes with you as well if you would like to learn more. For those who don’t know, I host a podcast called “Walking with Freya” that is a collection of stories from parents of kids with special needs, along with interviews with educators, therapists, authors, etc. I’ll share those at the bottom.
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I then shared my contact information and thanked the again for raising kind, inclusive children. I love to err on the side of compliments and diplomacy. As you can tell from the letter, I also get personal and vulnerable easily something many people are not comfortable with. I think it is important to educate your children's peers and their community. Sending this letter to parents before talking to their children felt like the right step towards opening those lines of communication. I wish you all luck in whatever endeavors you take on to educate those who spend time with your child.
Before I spoke to the class, I sent a letter to parents to prepare them for the upcoming conversation. I'm including the letter here for those who may wish to borrow from it or get ideas on how to approach the subject with their school. It may not always be easy to tell our story, but it is certainly valuable to do so.
-----------
Hello Fellow -rd Grade Parents!
Like most, if not all, of you, I am an advocate for inclusion and education. I believe it is difficult to have one without the other. For this reason, I am sending you this email.
Many of you know that Freya has Prader-Willi Syndrome. Maybe you’ve heard that but don’t know what it means. I didn’t. I assume that most of your children recognize that Freya has some unique challenges and needs and I am grateful for all of their kindness. Freya and I are preparing to speak to the class about Prader-Willi Syndrome so that her classmates may understand her better and hopefully help school be a safe place for her.
This is an incredibly vulnerable moment for us, perhaps more so for me. Where I grew up in southern Indiana, kids with diverse needs were carted off to the special education classroom. They rode the short bus and went to a separate classroom down some hallway at the back of the school. They sat in their own section during rallies and I honestly don’t remember a single one of them. I never want that for Freya.
Freya is not feeling confident about this conversation with her class. As her mother, and an advocate in the special needs community, I know this talk is important. But I have fear as well. I want the information gained simply to be a deeper understanding of who Freya is, why she may or may not do certain things, and especially the importance of food security to keep her safe. We are not looking for pity or a de-valuing of her as a peer. She does not need to become a project or a cause for someone.
Freya is a happy, willful, friendly, smart girl. She has some learning accommodations, struggles with her articulation, and is most likely never going to win a track meet. Like all of the other kids in the class, she is an asset.
Before I have this conversation with your children, I wanted to put it out there to you all for possible questions or suggestions on what to say. Have your kids noticed things about Freya and asked you about them? Have they had questions about people with diverse needs? Is there a way I can make this information more accessible to them?
I’m not going to go deeply into the technical side of the disorder, just mostly about the importance of food security and certain things that Freya herself has mentioned talking about (like why she sees the OT, why she gets a shot of growth hormone every night, or how finger knitting during class helps keep her hands busy so she doesn’t pick, a typical sign of anxiety).
Please feel free to let me know if there are things you would like me to discuss with your kids. I am aware that kids have questions that are uncomfortable and may seem rude when they are really just trying to understand and make sense of the world around them, so please don’t be shy.
The teacher suggested I share a few podcast episodes with you as well if you would like to learn more. For those who don’t know, I host a podcast called “Walking with Freya” that is a collection of stories from parents of kids with special needs, along with interviews with educators, therapists, authors, etc. I’ll share those at the bottom.
------
I then shared my contact information and thanked the again for raising kind, inclusive children. I love to err on the side of compliments and diplomacy. As you can tell from the letter, I also get personal and vulnerable easily something many people are not comfortable with. I think it is important to educate your children's peers and their community. Sending this letter to parents before talking to their children felt like the right step towards opening those lines of communication. I wish you all luck in whatever endeavors you take on to educate those who spend time with your child.
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